We had a very special time
as a family both grieving and celebrating Warren’s 4th anniversary
in heaven on February 8th. We
had the privilege of being where he is buried (or as we like to say, “planted”)
on the actual day for the first time since he passed away. Coastal Georgia is simply beautiful and we
are grateful his earthly shell is planted in a place that reminds us of the
Lord’s splendor and offers a glimpse of our eternal home.
This day is always
bittersweet, and as the years have passed, Meade and I try not to have an
expectation for this time….what we will feel, how we should respond, whether we
will shed fresh tears or not… We now
simply try to be present, reflect on a cherished life, and look to the Lord to
fill remaining holes.
We hug Warren’s marker,
feeling the deep pain of parents unable to get close enough to their beloved
child. Some day I will reach out and
feel more than stone; I will feel his warmth, feel his body whole, feel my joy indescribable.
And in these moments, as
we allow ourselves to deeply feel the love and to take in the pain, we are given a
measure of peace.
All amazing photos courtesy of our dear friend, Dave Rathbone |
We wait for our home
unseen… until this time, given a deposit.
A deposit of the eternal here on earth.
And a deposit of hope in His
glory:
“And we rejoice in the hope of the glory of God.
Not only so, but we also rejoice in our sufferings, because we know that
suffering produces perseverance; perseverance, character; and character, hope.
And hope does not disappoint us, because God has poured out his love into our
hearts by the Holy Spirit, whom he has given us.”
(Romans 5:2b-5).
A hope that does not disappoint.
I am sure your portion may also
seem hard at times. And let me validate
you: it is! Jesus understands that. Even He asked if His cup could be taken away (Matt. 26:39). But as we look to the
Lord and carry His deposit of hope in our hearts, we find our King is actually
giving us His double portion of everlasting joy… something that can never be
taken from us in this life or the next. And we can learn to say, even if it is with fear and
trembling, “Not my will Lord but yours be done.”
-----
We have some praise reports to share!! Thank you as always for your continued
prayers!
-John is sleeping much
better at night!! Therefore, we all are
getting some much needed rest!
-A world-renowned
neurologist/mitochondrial doctor came to town to speak to a group of parents,
and he told us about some additional supplements for John to try that may help
him.
-John was approved for
Medicaid! This is great news! Just to clarify, Medicaid has a waiver
program for individuals with long term medical needs and disabilities. It is funded mostly from the state but
also somewhat from the federal government. It
basically helps to cover many medical expenses, copays, therapies, equipment,
and medications that are not covered by our primary insurance. A huge help indeed!
Lastly, here are a few prayer requests:
-Tuesday, John has an
appointment with the seating/mobility/wheelchair clinic at the children’s
hospital here to get fitted for a new stander, gait trainer, and possible other
pieces of equipment. (And last week, he
was casted and measured for leg, arm, and torso braces that will be used with
different activities.)
John is a good sport, as always! |
-John has a BIG doctor’s
appointment on Wednesday at 2:00 with Dr. Shoffner, the mitochondrial expert
who performed and analyzed John’s muscle biopsy in January 2010.
-For John’s mobility
-For guidance about what
we should focus on in John’s daily therapeutic activities
-For an upcoming therapy
trip in April which will focus on reflex expression and integration.
(Scroll down to see cute pictures at the bottom)
“The
Spirit of the Sovereign Lord is on me,
because the Lord has anointed me to
preach good news to the poor.
He has sent me to bind up the brokenhearted,
to
proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord’s
favor and the
day of vengeance of our God,
to comfort all who mourn, and
provide for those who grieve in Zion—
to bestow on them a crown of beauty instead
of ashes,
the oil of gladness
instead of mourning,
and a garment of
praise
instead of a spirit of despair.
They will be called oaks of
righteousness, a planting of the Lord
for the display of his
splendor. Instead of their shame
my people will
receive a double portion,
and instead of disgrace
they will rejoice in their
inheritance;
and so they will inherit a double portion in their land, and
everlasting joy will be theirs.”
-Isaiah 61:
1-3, 7
First professional hair cuts for both John and Daniel! |
Finished product! |
Daddy and Daniel |
John pulling off the ribbon to a birthday present all by himself! John is one special boy to get to celebrate his birthday for over a month! |